Firefly Upsee: Making Huge Strides for a Military Family

Earlier this month, we received an email and video from Amy Bowns, a military wife and mother, stationed at Fort Bragg, NC. “I just wanted to share a video I made of my daughter, Tennyson, using the new Upsee walking device. We are one of four very lucky families in the US chosen to trial it. It’s a really amazing product and has allowed her to experience the movement of walking!”

The Upsee, invented by a mother of a child with cerebral palsy, is a harness device that allows children and parents to take steps together simultaneously using specially-engineered sandals. The child stands upright, supported by a harness that is attached to a belt around the parent’s waist, and as the parent walks, the child is able to move along with them.

The video made us all cry tears of joy and love and we couldn’t wait to talk to Amy about her amazing experiences with her daughter Tennyson and the Upsee.

MSNN: Tell us about yourself and your family.
Amy: My husband and I have been married for eight years. We have been stationed at Fort Campbell, Fort Knox, and here at Fort Bragg. We have two daughters, Tennyson, 4 ½ years, and Harlynn, 13 months. I am currently a stay at home Mom, to care for our children and Tennyson’s medical and therapy needs.

MSNN: How did you hear about the Upsee? What was the process for becoming one of four US families to try it out?Amy: I saw an ad posted on a Facebook page I follow (Love that Max) looking for families with children who had limited motor skills to trial new equipment. I e-mailed Firefly and within a few weeks I had a phone interview to see if Tennyson was a good fit and if I was interested in the product they wanted us to try, which was the Upsee. I wasn’t aware at that time that only four US families were going to be part of the trial, so I feel very lucky that Tennyson has been able to be part of this trial period.

MSNN: The video is incredible – can you describe your experience with the Upsee?Amy: The video seems to be emotional for a lot of people to watch. Either because they know Tennyson and are so excited to see her doing new things, or because they have or know a child similar to Tennyson and want them to have the same opportunity – to be upright, interacting, and being included. My experience with the Upsee has been really wonderful. When we first received it, I thought, “Why didn’t I think of this”? It’s always awesome when equipment can make a difference in your child’s quality of life. It’s really easy to use and very high quality. Her doctors and therapists have also been very supportive and enthusiastic about it.

MSNN: Emotionally, how would you describe the first time you used it?Amy: My emotions caught me by surprise! My husband and I were reading the instructions, and strapping her into it, and then all of sudden, there she was in front of me, standing. It took my breath away and I was definitely blinking back tears. It’s almost like you forget that it’s something they should be doing, because you’re so used to them not doing it. Initially, I watched Tennyson’s face; to see where her eyes were drawn to, if she was in pain, if she looked uncomfortable. But she was happy! That first night she was in the Upsee, we played a short game of “chase mommy”, which she thought was hilarious, and it was a first for her, so then I “chased” her and she loved it. It was adorable.

MSNN: How often is it used on a daily bases? How long is the trial?Amy: I send the Upsee to school with Tennyson, since that’s where she spends the majority of her day. She goes to an inclusive developmental pre-school. On average, she uses it three times a week. She is able to tolerate it for 30-45 minutes each time. Her teachers and therapists use it during appropriate activities like recess, dancing, circle time, rotating through centers, etc.
The trial period will end when the Upsee goes on sale April 7th at 2pm BST (that’s 9am Eastern standard time). The interest has been overwhelming and they expect to sell out quickly, with a three month wait to replenish stock. It will cost $489, which includes shipping.

MSNN: How did Tennyson like being in the Upsee?Amy: She really enjoys it! You can see in the video that although her head control isn’t perfect, she’s interested in everything going on around her. I think she really loves being eye level with her peers; it’s motivating! She didn’t have any pain or discomfort, which would have been an indication to stop using it.

MSNN: What is the protocol for using the Upsee? Are you seeing improvement in tone or ability?
Amy: The basic recommendation was to use it on a weekly basis, to see possible benefits. We have seen improvement in Tennyson’s leg strength and head control. She has spastic quadriplegia cerebral palsy so her legs have high tone and are weak, while her core has low tone. She isn’t able to sit, crawl, stand, or walk. We have found that if we allow a slight bend in her knees, she can activate weight bearing when she is motivated. We have seen her weight bearing time go from 2-3 seconds to up to 10 seconds. That’s a big improvement for Tennyson!

MSNN: How does the Upsee affect your body (the parent)? Does it hurt your back, etc?
Amy: You can feel it in your lower back a little bit, but nothing painful that would make you want to stop using it. You have the weight of your child strapped to you, so realistically you are going to feel some pull. The child’s hip and shoulder straps relieve some of the weight. The best part is the adult can have their hands free. Any adult who is pregnant or has a history of back pain or problems should not use the Upsee. Also, the child’s shoulders cannot be taller than the parents belly button.

MSNN: Where do you go from here?
Amy: We will keep using the Upsee every chance we get! I think parents will agree that we just want to give our kids every opportunity that any other child would get. To be able to give them experiences they might otherwise would not have, is a gift. The Upsee makes that easier. It allows parents to be able to say, “This is how my child can be included completely”.

We are so thankful for Amy Bowns and her daughter Tennyson for the incredible video and interview. The Upsee is changing lives and creating a new world for children and we are so proud! To follow Amy and her journey with Tennyson, you can find her blog TennSense at: tennsense.blogspot.com or on Facebook.

Like this:

2 comments on “Firefly Upsee: Making Huge Strides for a Military Family”

Is Tricare covering these? How can we order one with and with out Tricare coverage? Please we really want to try this. Our son is 6yrs old, CP, Seizure Disorder, GTube and Bisually Impaired are just a few of his diagnoses. This would be such a blessing to have here he could literally walk side by side and using his energy . Gait trainers r great but he feels so sad when in it and doesn’t so much but this oh this I can totally see him enjoying. Please it would mean the world for my husband aswell as he too had been thinking for a few yrs now how to make something like this. Any info would be awesome please and thank you.

Hi Celia! Unfortunately, TRICARE does not cover the Upsee at this time. However, you can order the Upsee on the website at: http://www.fireflyfriends.com. They are $489. I just ordered one this morning for my daughter, who has spastic quad CP. The Upsee looks amazing and is definitely changing lives! ~Wendy

A site to discuss and learn about TRICARE Philippines Policies and Issues that are often times implemented in secret by the Defense Health Agency (DHA). Policies that result in payments at about 7.7% and 3.8% of what they should be or $328 per under 65 person instead of the expected $4,261 & $328 per over 65 person instead of the expected $8,650.